Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Constant spaced out feeling

Discussion in 'Lyme Disease and Co-Infections' started by skyfall, Oct 23, 2015.

  1. skyfall

    skyfall

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    Can someone suggest ways to get rid of constant brain fog. It feels like i am constantly drugged, not in reality, and a spaced out feeling and indoor lights look really bright. Also, along with this comes eye pain and i have a really hard time focusing eyes or reading sometimes. If so what helped you, and do you know what you can pinpoint this down to? The lyme or the company it brought with it? It is the worst feeling ever. If i could get rid of that one symptom i'd feel like myself again. Sometimes i wonder if it will ever go away
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    No. I wish there was something. When mine first started a year or so ago, I thought, how can I live with this? now I barely notice it, unless I'm sleep deprived or drug hungover. Then it's amped up a bunch.

    I can barely focus as I type.

    Another one of the lovely gifts of ME/CFS
     
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  3. skyfall

    skyfall

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    Did anything help it or did you just get used to it? Mine is lyme i guess. Hard to tell
     
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  4. drob31

    drob31 Senior Member

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    When I have the spaced out feeling, I think it was caused by low cortisol.

    I bought some hydrocortisone from alldaychemist, and I waited until I had one of these spacey moments, then took 10 mg. To my surprise, the spaciness went away, although it wasn't a silver bullet for everything.
     
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  5. skyfall

    skyfall

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    Mine doesn't come and go sadly, it's constant. I hate it. I feel like i'll have it forever
     
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  6. minkeygirl

    minkeygirl But I Look So Good.

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    Mine is constant. Came out of the blue. I just live with it. After awhile you don't notice it.

    I don't know if I have Lyme but I probably have serious brain inflammation
     
  7. Snookum96

    Snookum96 Senior Member

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    Mine is constant but varies in severity. Like @minkeygirl i don't even notice it as much anymore unless it's severe.

    I really limit my sugar intake and that helped with the severity of some of the food related episodes, but it's still there all the time.

    It's been like this for about a year and a half.
     
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  8. skyfall

    skyfall

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    Do you have lyme?
     
  9. Effi

    Effi Senior Member

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    @skyfall another brain fog buddy here :depressed: It was my first major symptom and has never gone away since. So I guess I've had it non stop for five years. It's horrible, but I try to ignore it. It's always really bad (like I'm never sure if I'm awake or dreaming - although rationally of course I know I am awake). It gets worse when I have to concentrate more or when I overexert. I have tried many things, but nothing has worked so far, not even a little bit.
    That's what I think my situation is. My brain can't not be inflamed. It feels like there's a constant fire burning in there. :fire: not fun :thumbdown:
     
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  10. Snookum96

    Snookum96 Senior Member

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    Not that I know of. I haven't been tested yet because it took me so long to find a doctor that believed my symptoms are physical. I'm working with a diagnostician now and that's in the next round of tests I believe.
     
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  11. skyfall

    skyfall

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    That sucks. Are you in treatment for anything?
     
  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I don't have Lyme, just CFS/ME for 24 years. I'm just going to throw this out there and Your Mileage May Vary. I've found PQQ to be a useful supplement to get rid of some brain fog. I don't take it after 12 noon or it will keep me awake.

    On the downside, some people have said it makes them feel speedy or wired. I've never had that problem, but I thought you should be aware of it.
    Of all the supplements I've tried, this one feels like it makes my brain function better and makes me more alert without any jittery feelings.

    Here are some sources for you:
    https://www.swansonvitamins.com/swanson-ultra-pqq-pyrroloquinoline-quinone-20-mg-30-veg-caps

    www.amazon.com/Mind-Source-Naturals-Inc-Tabs/dp/B00BTNIJ0A (these are 20mg tablets)

    The great thing with the Source Naturals tablet is that you can cut it if you have a pill cutter handy. I can get some relief by taking 10mg/day.
     
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  13. Effi

    Effi Senior Member

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    I did go to various doctors to try to get relief, but none of them knew what to do about it. Another problem that I have re: treatment is that I'm hypersensitive to pretty much everything, so I have tried a bunch of things on my own, but most of it just made me worse or had no effect at all. The only thing that somewhat helps, and definitely helps me function better physically is manual lymphatic drainage.
     
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  14. JBB

    JBB Senior Member

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    @skyfall I don't usually post here anymore as I've found the many Lyme facebook groups and speaking to many Lymies for over a year now is a better way to get info.

    My gf who is a psychologist who has Lyme told me about this, I also get it from time to time: the feeling is called derealization (feeling that you are in a dream / nothing outside of you is real) or depersonalization (feeling that you are not real). The two are subtly different...both feel like you have been drugged and essentially this is what happens.

    It seems to be caused by Babesia and maybe mold illness / toxicity both of which I have (I have Lyme obviously too but Lyme I don't think causes this). Best affordable treatment might be liposomal artemisinin for Babesia which Klinghardt uses. Artensunate injectable also good for Babesia, I did MMS which made the symptoms much worse (herx, MMS targets Babesia well over other infections) or there are the ILADS guidelines. Mold - get out of it and take binders. Dr Shoemaker - Chlorestyramine or Dr Klinghardt - Chlorella.

    If you have Babesia you'll probably have Lyme too. The other problem you'll run into is that once you fix one symptom another will pop up often in its place. This is the merry go round of Lyme and co infections. I did hyperthermia @ 42 degrees, fasted after for 21 days, was feeling very much better, now relapsed.

    Anyway food for thought for you :).
     
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  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    So many people's experiences mirror mine also. If I remember correctly in ME it tends to go rather like this:

    Cognitive, Cardiac/Autonomic, Muscle, Immune, Allergy in terms of the progression that can occur and the various failures of the body. All of the people I've met with ME, report their 'spaced out' feeling was one of the first symptoms they ever experienced, regardless of if they are out of the house, or bedridden. I always found that interesting in terms of guessing the reason why.

    One reason could be brain waves.

    On that topic here are two findings I've found on tests that may interest others:

    Although in absence of epilepsy an EEG is generally pointless in ME other than 'ruling out' known seizure disorders, what it does tend to show is drowsiness. Drowsiness on an EEG is not normal if you've slept.

    In my view, superior than an EEG (for ME specifically) is a QEEG. This produces a 'brain map' to analyse with various voltages and types of brain waves that can be understood by people who look at the data for you. Due to being linked to a laptop/computer you'll also get a little collection of images of the brain can be shown to be abnormal, and these can be printed off and kept for your own archiving. On my result it showed my awake brain had sleep waves and also little jolts of seizure activity intermittently. In addition my brain had generally slower wave activity that would would be expected in a concious, alert individual who is paying attention, with eyes open.

    Although the QEEG doesn't explain all of the reasons you may feel spaced out, it may explain some evidence for cognitive dysfunction, and potentially aid you medically/legally if your cognitive dysfunction is said to be psychosomatic. On that topic, n terms of the relevance to a QEEG to 'CFS' specifically, e.g. the sleep brain waves when awake phenomena, this was recently shown to be found in 'CFS' research (Stanford conference I think?) so I know it wasn't a fluke event and more to do with the actual pathogenesis of the disease. Previously before this, there was other research also, although perhaps that was EEG and not QEEG.

    Getting hold of an QEEG usually requires visiting a private clinic, sometime if you're lucky a technician will offer you a home visit. It's not painful, but rather uncomfortable to have the scratching feeling on your scalp (where they attach the sensors) and the 'cap' you wear is also rather peculiar in terms of sensations. However, if you can tolerate the procedure for a short while, it might be beneficial to some people to have this test.
     
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  16. Effi

    Effi Senior Member

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    interesting!! thanks for sharing @Research 1st
     
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  17. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    No problem. It might be a dead end, but then again it might not.

    To feel spaced out (after sleeping) with otherwise normal psychology, blood pressure, oxygenation and glucose/lactate levels at rest certainly does point towards brain activity being abnormal, and we can't go down this route without brain wave tests.
     
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  18. Dufresne

    Dufresne almost there...

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    I grew up with thick brain fog as you describe, and I'll never be able to put into words the effect it’s had on my life. And yet my brain fog is currently about 5-10% of what it once was. It's worth mentioning, though, that the last 10% is where all the good stuff happens. It's not so much that your vision gets a whole lot clearer but you begin to feel things you see and hear. If you’ve ever had a clear head you know what I’m talking about. I never used to understand why people looked at a sunset, or that walking in the woods could actually make you feel something. Now I get it.

    I had that terrible sensitivity to bright lights too. My consciousness used to totally cloud over and my cognition go to shit whenever I was around fluorescent lights or when I went outside to an overcast, white sky. I suffered this from childhood well into my thirties.

    So the first thing to help was ditching the carbs and eating a ton of garlic. I also took nystatin and ketoconazole, but I believe it was mainly the garlic that did it. Within a month 50-60% of the fog had lifted. Candida is a bitch. (Lyme and co, and 30 courses of ABX for recurrent strep throat will do that to you). And there's a die-off from killing candida. I used to wake up drooling, not knowing where I was. This would recur over the next year or so whenever I ate carbs and then garlic. But somewhere over the next couple years on a paleo diet it stopped. And in that time my head continued to clear.

    So that brought me to about 25% remaining fog. And this seems to be due to an energy problem, specifically the one arising from an overload of oxidative stress. In my case this is mostly due to babesia. I've absolutely no brain fog when the bug is stunned. The problem is it’s tough to treat when you’ve had it for decades. In the meantime what's working fairly well for my head is a macrobiotic diet, which is the matter of reducing the more acidifying foods. Paleo had taken me a long way but I was still eating too much red meat. According to proponents of the diet, beef is horribly acidifying, and most mammalian meets are pretty bad too. Carbs are also mostly acidifying. So I eat almost no carbs and mammalian meat. That's what has brought me to my 5-10% fog today.
     
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  19. panckage

    panckage Senior Member

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    LDN has gotten rid of most of my brain fog. Even when I crash now I can use my brain to think about things :D
     
  20. skyfall

    skyfall

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    Thank you so much for the reply. I know exactly what you mean by feeling it. I just often feel like i am going through the motions and it is so very weird. I look in the mirror and don't even feel like the person in the reflection. Everything just feels all slowed down and not real. It is pretty bizarre. I know i have a lot going on so it is so hard to pinpoint the problem seems so many different things can cause the problem.

    I have wondered if i have candida, but i went on a strict protocol for it for a few weeks and didn't remotely see any improvement. The doctor at the time said if i had it i probably would see a little improvement at least. My lyme doctor suspects lyme, bartonella, and babesia. I also have reactivated Epstein Barr and Mycoplasma is also suspected. I also have gallstones and fatty liver found on an ultrasound. They said the fatty liver was due to the gallstones. I am not sure if this puts even more burden on my liver in terms of detoxing. I also have methyl issues which can also cause brain fog. It feels hopeless in a way trying to pin down what could be the cause.

    I had another lyme patient tell me they suspected their fog was due to babesia also. I am just starting treatment now so i guess i will see how things go. I am trying to go 100 percent Paleo. I am just having a hard time letting go of coffee and sweets seems i have such a sweet tooth.







     

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